PKD Life - Summer 2020 - 12

frequently
asked questions
Am I eligible to enroll?

People of all ages

How will I learn about clinical studies?

The

diagnosed with autosomal dominant polycystic kidney disease (ADPKD) may join the

ADPKD Patient Registry also serves as a recruitment database that can be used to connect you

Registry. Patients under 18 may join with the
permission of a parent or legal guardian.

to important research studies. Your participation will help the medical community accelerate

If you do not have an official diagnosis but
have a family history and suspect that you have
PKD, you are welcome to join if you agree to
notify Registry staff of your diagnosis if and
when it becomes available.
What types of data will be collected in the
ADPKD Registry? To understand the full
impact and progression of ADPKD, the Registry
collects a wide array of patient data, including:
> Diagnosis and medical details
> Demographics
> Management of PKD-related symptoms
> Treatment and PKD progression
> Family history
> Diet and quality of life
Is my information secure? Yes, the ADPKD
Patient Registry follows strict government
guidelines to assure your personal information
is protected. Personal information is stored
in a secure, password-protected database.
When you join, the Registry will assign you
a unique numeric identifier. Only authorized Registry staff will be able to connect this
identifier to your name and contact information. An Investigational Review Board (IRB)
has approved this Registry.

discoveries and propel research toward new
treatments and a cure. Researchers will never
contact you directly. The ADPKD Patient Registry
staff will contact you by email or through your
patient portal when a study is looking for participants. It is always your decision whether to
participate or receive additional information.
How do you use my data? The information you
provide will immediately become de-identified.
No one outside authorized Registry staff can
connect your data with your personal identity.
The ADPKD Patient Registry will share your
anonymized data with researchers to speed
the development of new discoveries and therapies. Your data also helps drug developers
know the size of the ADPKD population available
for trials and helps identify new trial sites,
increasing our community's access to trials and
potential therapies.
How do I sign up?

Signing up online is easy.

Visit pkdcure.org/registry.
http://www.pkdcure.org/registry
PKD Life - Summer 2020

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